Tower turns pink on
National PVNH day

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THINK pink as the Emirates Spinnaker Tower lights up in support of a rare brain condition on Friday.

Periventricular Nodular Heterotopia (PVNH) is the presence of grey matter in the wrong part of the brain and if left untreated the condition can be fatal.

It is a rare neurological condition that can cause seizures in up to 90 per cent of those affected, with many left with motor, cognitive and developmental delays.

The PVNH charity was founded by Yolaine Dupont of Vancouver, USA, in memory of her seven-month-old daughter, Ella who died in 2008 from respiratory failure caused by the disorder, and it is holding an awareness day on Friday.

The charity aims to educate patients and their families, as well as medical professionals in the hope of developing better treatment to manage symptoms as there is currently no cure.

Ms Dupont’s charity supports more than 300 families in 23 countries, with 40 per cent of those living in the UK.

General manager of the Spinnaker Tower Sarah Webb said: ‘We are delighted to be able to light up the tower for multiple worthy causes throughout the year.

‘I am so pleased that we are able to turn the tower pink for world PVNH disorder awareness day and help encourage understanding of this condition.’

The changing colour of the Spinnaker is part of a worldwide campaign by the PVNH charity, which is aiming to spread the message about the condition.

Ellie Morgan, 26, press relations executive for the Emirates Spinnaker Tower, said: ‘It is a condition that affects quite a small number of people in the UK.

‘When we received a request from the charity to light the tower pink, we were happy to do so to help raise awareness.’

The disorder is still quite widely unknown, particularly in the UK, and by having days like this, Ms Dupont and others who work for the charity hope to gain as much awareness as possible.

Jane Hartley-Jacques who has a familial PVNH diagnosis said that the more people know about it the closer they will come to finding a cure.

She said: ‘When you have a rare disorder you face many medical professionals who have yet to meet a patient like you.’

Ms Dupont’s daughter would have turned seven on Friday, and the family is encouraging people of the UK to join the conversation about PVNH by wearing something pink or yellow.